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An Early Intervention and Integrated Model of Approach to providing care, support and education for older adults and their carers living with dementia in the community.

January 2016

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PROJECT TITLE: An Early Intervention and Integrated Model of Approach to providing care,

support and education for older adults and their carers living with dementia in the

community.

KEYWORDS: District Nursing, Dementia, Integration, Early Intervention, Person-Centred,

Education.

DURATION OF PROJECT: 6 months (July 2015-December 2015)

DATE OF SUBMISSION: 28/01/2016

PROJECT LEAD: Val Burns

PROJECT TEAM:

Name Job Title Email Address Val Burns Clinical Team

Leader val.burns@aapct.scot.nhs.uk

Kerry Rennie Dementia Support Coordinator

KRennie@north-ayrshire.gcsx.gov.uk

Clare Mills Manager, Dementia Respite Services

CMills@north-ayrshire.gcsx.gov.uk

Donna Paterson Dementia Advisor Alzheimer’s Scotland

DPaterson@Alzscot.org

Emily Boyle

Team Manager, Care Management & Review (Older People)

eboyle@north-ayrshire.gcsx.gov.uk

Charlotte Ann Drummond

Social Worker, Care Management & Review (Older People)

cdrummond@north-ayrshire.gcsx.gov.uk

Emma Maclean

District Nursing Sister- Secondment (spq student)

Emma.maclean@aapct.scot.nhs.uk

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SUMMARY

Background: Dementia is a complex condition that impacts on the lives of approximately

90,000 people in Scotland (Alzheimer Scotland 2015) and 2464 over 65’s within North

Ayrshire (QOF 2014). Greater demands are being made on community nursing due to the

policy shift from acute to community care, an ageing population and the focus now on

supporting people with long term conditions (Scottish Government 2009). The Modernising

Nursing in the Community 2020 (NHS Education for Scotland 2015) vision is for everyone to

live longer healthier lives at home with an integrated health and care system that focuses on

anticipating needs and supporting people to manage their long-term conditions.

Aim: To increase post diagnosis referrals to a community nursing team, shifting the focus

from a reactive nursing task intervention to a more proactive approach, enabling patients and

their carers’ the opportunity to access a coordinated and integrated pathway of care and

support from health, social and third sector care providers. This would include provision of

education for staff to encourage a person-centred approach to care for the individual living

with dementia.

Method: Data was collated from the General Medical Practice register for a number of

patients with a diagnosis of dementia recorded on the dementia register and that were known

to the district nursing service and recorded on the caseload database between July 2015 (start

of project) and Dec 2015 (end of project). Data was extracted from an excel workload tool

used to plan district nursing visits, and would provide information on district nursing planned

face-to-face and non-face-to-face time with patients and carers living with dementia pre

project, and also during the six month duration of the project. The team; which consisted of

four district nurses, recorded the amount of time spent with each individual directly or

indirectly each day. The number of hours identified on the workforce tool related to care for

patients or carers living with dementia. Community nursing staff were asked to rate their level

of knowledge relating to dementia on a scale of 1-10 at the onset of the project and then

repeated again following the delivery of training and experiential learning during the period of

the project. An electronic audit tool was employed to record if the Standards of Care for

Dementia Scotland (Scottish Government 2011) were adhered to within the assessment, care

planning and review process.

Results: Analysis of the data shows a significant increase in the numbers of patients from the

General Medical Practice dementia register recorded on the district nursing caseload

following completion of this project.

There was a significant improvement in the level of district nursing knowledge pre and post

project with the district nursing team recording that their level of knowledge had increased

following involvement with this project and through engaging with e-learning and attending

study days.

Audit of district nursing documentation demonstrated that 80 percent of patient records

referred to the ‘I’ statements from the Standards of Care for Dementia Scotland (Scottish

Government 2011).

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BACKGROUND

Dementia is a complex condition that impacts on the lives of approximately 90,000 people in

Scotland (Alzheimer’s Scotland 2015) and 2464 over 65’s within North Ayrshire (QOF 2014).

Estimates suggest that the number of people living with dementia is set to rise to 127,000

within the next 20 years and this predicted increase in dementia prevalence will have

significant health and socioeconomic challenges (Martin-Khan 2014) and also considerable

health and cost impact on carers in comparison with non-carers (RCN 2013).

This project enabled community nurses to play a focal role as co-ordinators of care for this

growing number of adults with dementia and their carers in Ayrshire. Greater demands are

being placed on community nursing due to the policy shift from acute to community care, an

ageing population and the focus now on supporting people with long-term conditions

(Scottish Government 2009). Modernising Nursing in the Community 2020 (NHS Education for

Scotland 2015) vision is for everyone to live, longer healthier lives at home with an integrated

health and care system that focuses on anticipating needs and supporting people to manage

long-term conditions. The model of approach for this QNIS ‘Catalyst for Change’ project

aspired to help maintain physical, psychological and social health and well-being, anticipating

any decline before it became acute, ensuring individuals’ living with dementia were not

admitted to hospital unnecessarily and stayed connected to the community. The growing

complexity of the community nursing caseload requires maximising the potential for the

workforce to meet the needs of clients with increasingly complex co-morbidities and

dependencies. Analysis of caseload activity and community nursing intervention for

individuals living with dementia and carers within North Ayrshire appears to be intermittent,

ad-hoc and reactive to crisis. Information from a workforce and SBAR reporting tool

developed by the project lead and currently used by the community nursing team within

North Ayrshire demonstrated that a high proportion of visits related to tasks such as

continence, urinary catheter care and medication administration.

Referral of individuals living with dementia to the community nursing team appeared to be

limited to whenever there was a functional need or crisis management. There were no

proactive pathways utilized by the district nursing service for review and support of these

patients. This conflicts with the key outcomes of the National Dementia Strategy (Scottish

Government 2013) highlighting a need to ensure that care is flexible, reliable, accessible and

that more people with dementia, their families and their carers are being involved as equal

partners in managing their care throughout the journey of their illness. Improving the quality

of care received is an essential component for addressing disadvantage, discrimination and

stigma (Vernooij-Dassen et al 2005). Older adults (over 65 years) and carers living in North

Ayrshire face widespread discrimination and inequality as a consequence of social and

economic factors (Audit Scotland 2012). The prevalence of dementia increases with age, and

most people living with dementia are over the age of 65 (Heese 2015) It has been found that

older people with dementia are exposed not only to the stigma associated with mental illness

but also to age discrimination (Benbow and Jolley 2015). Dementia is not a normal ageing

progression and expectations that it is, leads individuals to assume that it is not responsive to

intervention (Wortmann 2013). Attitudes such as these undermine the autonomy and

decision-making capacity of people with dementia (Milne 2010) meaning that people living

with dementia are also at risk of discrimination and infringements of their human rights

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because they do not have the capacity to challenge such abuses and face a poorer quality of

life than the general population (Alzheimer Scotland 2014). There are also significant health

inequalities in sections of the community, due to wider determinants like poverty (NHS

Education for Scotland 2014). Studies have highlighted that from 5% of the most deprived data

zones in Scotland, 3.7% were found to be within North Ayrshire, with deprivation levels

continuing to rise (Scottish Index of Multiple Deprivation 2012). The scale and challenge of

supporting individuals with dementia is increasing and NHS Ayrshire and Arran has higher than

both the Scottish and UK average percentage of patients with a diagnosis of dementia

registered by GP practices (QOF 2014). General Practitioners often struggle to deal with many

of the issues faced by patients living with dementia due to appointment time constraints

(Leach and Shepherd 2014). Under diagnosis of dementia in primary care may not be

attributed to lack of diagnostic skills, but rather to the interaction of case-complexity and

pressure on time (Lliffe et al 2009).

Community nurses are therefore in an ideal position within primary care to support patients

and their families as they work at the interface between patient and environment, and are

recognized as being leaders in designing services that meet the needs of the local population

whilst tackling inequalities (Leach and Shepherd 2013).

The community nursing team has the advantage of accessibility, timely response, and the

knowledge and experience of liaising with other professionals and agencies. Community

mental health nurses (CMHN) have a key role in responding effectively to the newly identified

needs of people with early dementia, district nurses however are often one of the first

professionals to notice changes in a person’s behaviours and cognitive state (Manthorpe and

Lliffe 2007). The strategic plan (Scottish Government 2013) to support timely diagnosis and

enhance patient care outcomes would suggest that all community nurses should be able to

recognize the possibility of dementia and support those undergoing referral or assessment

and throughout all stages of their illness. Training in dementia recognition and continuity of

support cannot be restricted to CMHNs (Manthorpe, Lliffe and Eden 2003) and the role of

community health nurses must grow along with the increasingly ageing population and the

resulting increase in people living with dementia, identifying needs, and providing subsequent

management and coordinating services (Huang et al 2013).

General Practitioners in NHS Ayrshire and Arran play an important role in the detection and

management of dementia and are generally the first point of contact for individuals with

suspected cognitive impairment or dementia. Timely diagnosis enables people to plan ahead

while they still have capacity to do so and means they can get early and effective access to

drug and other interventions, which can sustain their cognition, mental wellbeing and quality

of life (Scotland Government 2013). Referral to mental health services for a formal diagnosis is

the gateway to one-year post diagnostic support within NHS Ayrshire and Arran.

Information and treatment and clear referral and support pathways are in place within North

Ayrshire, however ongoing support throughout all stages of the condition to end of life

appears to be fragmented with no clear care management structure in place.

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AIMS AND OBJECTIVES

The project had three primary drivers; pathway for post diagnostic support is clear and

understood, provision of education for staff, and integration of health, social care and third

sector approaches to assessment, care planning with an outcome focused approach to care.

The potential objective being to increase post diagnosis referrals to a community nursing

team shifting the focus from a reactive nursing task intervention approach to a more proactive

approach, enabling patients and their carers’ opportunity to access a coordinated integrated

pathway of care and support. This project sought to provide a continuing pathway (Appendix

1) involving a small pilot aligned to a North Ayrshire General Medical practice with a practice

population of 6150.

New legislation has set out the framework for integration in Scotland (Scottish Government

2015) providing an opportunity for a joint approach to co-ordinate the interventions required

to support people living with dementia. Improving the ability of people with dementia to live

well with support in the community may require a series of connections spanning both health

and social care. Where integrated care models have been successful there is evidence to show

that close collaboration between local authorities, service providers, third sector and frontline

staff have been instrumental to that success (RCN 2013). This QNIS ‘Catalyst for Change’

project provided an opportunity for an integrated approach building on an existing model of

collaborative health and social care support for older people within North Ayrshire. The

project aimed to provide a pathway of referral and support for individuals living with

dementia and their carers. Co-ordination by the community nursing team incorporated the

key components of the 8 Pillar Model of Support (Alzheimer Scotland 2015) following on and

complementing the 5 Pillar model of Support coordinated by the community mental health

team. The Pillar models of support promote a committed practitioner to ensure all needs are

coordinated. This project aimed to provide individuals and their carers equitable access to

community support post diagnosis, throughout all stages of the illness; early, moderate,

severe and end of life and therefore parallel to the support offered to individuals diagnosed

with cancer. Studies suggest that palliative care for individuals living with dementia is not

currently tailored to the unpredictable trajectory of this condition (Treolar, Crugel and Adams

2009). Compared with cancer and other long-term conditions, people with dementia may

have different end of life needs, including communication and cognitive difficulties (Candy et

al 2015). Studies have shown that carers and individuals may find health and social care

systems difficult to navigate (Peel and Harding 2010), and that successful care management

involves supporting individuals to ‘navigate the system”, with effective communication

between professionals being a key factor in achieving a positive outcome (Khanasov, Vedel,

and Pluye 2014).

Integration of health, social care and third sector approaches to assessment and care

planning and an outcome-focused approach to care was a key element of the project plan.

Post diagnosis the individual would be referred by the General Practitioner to the district

nursing team who would co-ordinate the provision of an integrated health and social care

approach. Implementation would facilitate a ‘team around the person’ approach as

highlighted and advocated by the Dementia Carers Voices Survey (2015), with an identified

named health or social care professional ensuring co-ordination and access to a hub of

support and expertise across health, social care and third sector services.

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The lead professional responsible for care management would be identified on the hub

meeting agenda. The Community Mental Health Nursing team would continue to lead the

care for the assigned diagnostic and post diagnostic period. Continuing care management

would be the most appropriate health or social care professional identified.

Care management involves a pro-active approach to care and involves establishing a key

practitioner to co-ordinate care and this approach is relevant at all stages of dementia. The

national health and wellbeing outcomes framework (Scottish Government 2015b) shapes the

planning and delivery of health and social care services to ensure engagement of individuals

and carers at assessment and review. A personal outcomes approach is adopted to ensure

that care and support are appropriate and effective. This project would aim to facilitate

outcomes for individuals meeting the Standards of Care for Dementia in Scotland (Scottish

Government 2011). The team approach would draw on greater capacity and resources

collectively through partnership working. The hub meeting and close collaboration provided

opportunity to share interprofessional knowledge and skills and provide a unified and

cohesive approach as advocated within health and social care policy. An outcome-focused

approach changes the focus away from service-led approaches to focusing more on engaging

and enabling individuals and their carers.

The project created an opportunity to work closely with third sector organisations. The

Alzheimer’s Scotland North Ayrshire advisor was a crucial member of the team and was

actively involved with one-to-one and group education to support formal and informal carers

from the onset. This third sector involvement would increase the team’s awareness of other

avenues for the provision of advice, support and education. Provision of education for staff

was a key component of the project. Training needs analysis of community nurses within the

project pilot area identified that although staff had experiential practice based learning,

nurses expressed concern that they had never received formal education on dementia. NHS

Education for Scotland (NES) and the Scottish Social Services Council (SSSC) developed

Promoting Excellence: A Skills and Knowledge framework (Scottish Government 2011)

detailing the knowledge and skills all health and social services staff should aim to achieve in

relation to the role they play in supporting people with a diagnosis of dementia, and their

families and carers. The aim was to enable community nursing staff within the project team

to access NHS Education for Scotland (NES) comprehensive learning resource ‘Dementia

Skilled- Improving practice ‘modules and attend a training day delivered by a trainer from

North Ayrshire Health and Social Care Partnership. QNIS ‘catalyst for change’ funding would

facilitate the release of staff to engage with training and attend training dates.

There is evidence to suggest that the current workforce have insufficient training and skills to

work with people with dementia (Gandesha et al 2012, National Clinical Audit 2013).

It is estimated that individuals with dementia occupy 25% of general hospital beds in the NHS

with this rising to 40% in certain groups such as elderly care wards, with only half having a

prior diagnosis of dementia (Commissioning for Quality and Innovation 2014). Initiatives such

as the Dementia Champions Programme in Scotland were derived to prepare health and social

care staff in acute settings as change agents to drive the provision of education and increase

the awareness of acute staff caring for individuals with dementia (Banks et al 2013). An

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important component for an education programme for nurses carrying out a holistic

assessment is enabling the nurse to understand the impact that cognitive changes have on the

individual’s functional, social and psychological areas of their life. (While et al 2010). The

development of educational intervention for primary care staff promotes person-centred

responses to dementia and studies have shown that post-training, there are statistically

significant improvements in understanding of person-centred care for people with dementia;

attitudes to early diagnosis and awareness of non- cognitive dementia symptoms (Edwards,

Voss and Iliffe 2015). Person-centred approach to dementia education allows for an

exploration of the issues from the perspective of the person with dementia and it also allows

for a consideration of their rights (Loveday and Downs 2012).

Educational interventions developed to improve dementia diagnosis and management have

shown to be successful in increasing the number of dementia diagnoses and in changing

attitudes and knowledge of health care staff (Perry et al 2008). Dementia education

intervention for the project team aimed to foster person-centred attitudes involving all

members of a primary care team, and integrated care team including receptionists and

administrative support staff.

METHODS AND APPROACHES

In April 2004, the Quality Outcome Framework (QOF) was introduced as a voluntary reward

incentive as part of the General Medical Services (GMS) contract to encourage GP practices to

improve the care of patients with long-term conditions. Surgeries were responsible for

maintaining a QOF dementia register to record patients with a formal diagnosis of dementia.

The first phase of the project was to review the primary care dementia register within the

pilot practice and determine which patients on the register were known to the district

nursing team and recorded on the district nursing caseload database.

Clear referral and support pathways for one-year post dementia diagnosis are in place within

North Ayrshire. This is one of the key HEAT performance measures (Scottish Government

2015). It was important to meet with the community mental health team to review the

dementia register and share information regarding these patients and identify those who

were receiving follow up care from the CMHNs.

The community mental health nurses have an important role with regards to information,

advice and support during the diagnostic and post diagnostic period and the district nursing

team wished to complement and enhance the care and support without duplication or

encroachment of duties. Implementation of the pathway in the initial stages involved

reviewing electronic health and social care records to ascertain whether the individual or their

carer had a care manager. The Data Protection Act (1998) and the Human Rights Act (1998)

provide the legal and ethical parameters within which we can share information across

agencies and develop information-sharing protocols. A consent to share information

document was obtained during the assessment process and this facilitated patient related

discussions with the relevant parties at the multi-agency hub meeting. A community nurse

identified patients from the register who did not have a lead practitioner involved in their

care and offered a domiciliary visit. The purpose of engaging with the individual was to offer a

supportive and accessible contact. This approach required significant time investment to

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‘catch up’ with existing patients on the register and concurrently visit newly referred patients

from the practice. This process involved assessment, care planning and review, setting a

standard to ensure that all individuals would have an outcome focused approach to their care

and therefore adhering to the Standards of Care for Dementia (Scottish Government 2011).

Dementia assessment and support can be depicted as both specialist and generic roles and

the CMHNs recognised that patients who they were offering support to would benefit from an

assessment relating to their physical health problems. Many older adults with dementia

present with co-morbidities and physical health problems (Manthorpe, Lliffe and Eden 2003)

and these physical co morbidities are often treatable or reversible and include issues such as

incontinence, malnutrition, sleep disorders and poor mobility (Bunn et 2014). An excel

worksheet utilised within the project team to plan and record nature and complexity of visits,

including time allocation was employed to retrieve data specifically relating to visits for

individuals with dementia. This was detailed as either face-to-face time or non-face-to-face

time. Baseline information was retrieved for the month prior to commencement of the

project. Non-face-to-face time included periods spent liaising with General Practitioners and

other health, social and third sector agencies. Non face-face time also included gathering

information from previous consultations and electronic records in preparation for the first

visit.

Ensuring preparation prior to a first encounter is very important as competence and

professional credibility is considered necessary for district nurses when establishing a

trusting relationship with patients (Nygren-Zotterman et al 2014). Multidisciplinary team

(MDT) meetings were hosted within ‘Anamcara’, the dementia respite unit located within

North Ayrshire. Core team members attended each meeting (appendix 1) and peripheral

agencies were invited as generated by the needs of the individual.

This was an opportunity to discuss individuals referred to the hub and support facilitation of

their outcomes. The agenda was distributed to attending members in advance to provide

opportunity to collate information and the following information was detailed: Why a MDT

referral was made? And who made the referral? The minutes of the meeting detailed the

MDT recommendation and professionals responsible for implementation. The second phase

involved facilitating learning and confidence with this new practice whereby district nurses

were supporting individuals with dementia using a holistic, proactive approach. The MDT

meetings contributed to brief educational opportunity for all members of the team who

benefited from shared professional learning and expertise. For evaluation purposes the

community nursing staff were asked to rate their level of knowledge relating to dementia on

a scale of 1-10 at the onset of the project (appendix 2) and then repeat following delivery of

training and experiential learning gained during the period of the project.

FINDINGS

Quantitative findings- Patients recorded with a dementia diagnosis on the primary care

database increased from twenty three patients to thirty patients within the six -month period.

This database was adjusted to add new patients and remove patients who were deceased or

had left the practice. The number of patients on the register known to the district nurse team

dramatically increased from only one patient to twenty seven patients (fig 1). An excel

workload tool employed to plan district nursing visits would provide information on district

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nursing planned face to face and non face to face time with patients and carers living with

dementia pre project and during the six month duration of project. The team of four district

nurses recorded the amount of time spent with each individual directly or indirectly each day

(fig 2). The district nursing team were asked to rate their level of knowledge relating to

dementia at the beginning of the project and at the end of the project. The staff rated their

knowledge on a scale of 1-10 (1 being lowest level of knowledge). All staff members showed

an increase in knowledge as a result of being involved with the project.

An electronic audit questionnaire of documentation was carried out to evaluate whether the

‘I’ statements from the Standards of Care for Dementia in Scotland were achieved (fig 4).

Figure 1 Number of patients recorded on dementia register and on district nursing

caseload July 2015 (start of project) and Dec 2015 (end of project).

35

30

25

20

15

No of patients on dementia register

No of patients DN caseload

10

5

0

July December

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Figure 2 Number of hours identified on workforce tool related to care for patients/carers

living with dementia.

Figure 3 District Nursing team were asked to rate their knowledge of dementia on a scale

of 1-10 (1 being lowest level of knowledge) pre and post project.

Nurse 6

Nurse 5

Nurse 4

Post project

Nurse 3 Pre project

Nurse 2

Nurse 1

0 2 4 6 8 10

50

45

40

35

30

25

20

15

10

5

0

Face - face

Non face - face

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Element

Criterion record 1

record 2

record 3

record 4

record 5

% compliance

Process % compliance

C

on

ten

t o

f p

atie

nt

hel

d r

eco

rd

Diagnosis Recorded

yes yes yes no yes 80%

Content

of patient

held record

I have the right to be treated as a unique

individual

yes

yes

yes

yes

yes

100%

Right to be independent as possible

and included in community

yes

yes

yes

yes

yes

100%

I have the right to have

carers supported and

educated about dementia

yes

yes

yes

yes

yes

100%

I have the right to end of life care that respects

my wishes

no

no

no

no

no

0%

I have the right to access

a range of treatment,

care and support

yes

yes

yes

yes

yes

100%

80%

Figure 4. An audit of documentation and adherence with standards of care for dementia

Content of patient held record

100%

90%

80%

70%

60%

50%

40%

30%

20%

10%

0%

80%

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DISCUSSION

The project aimed to develop an integrated health and social care pathway to provide support

for older adults and their carers living with dementia in the community co-ordinated by a

district nurse. The nurse would ensure equitable access to support, information and care from

diagnosis throughout all stages of their illness to end of life.

It is evident from the analysis of data from the dementia register and corresponding district

nursing caseload numbers that prior to the project, co-ordinated care management from

community nurses was minimal. Figure 1 indicates the district nursing team knew only one

individual identified from the dementia register. Caseload management is a vital component of

the district nurse role and as this pathway of care evolved it demonstrated that nurses needed

to be proactive in their approach to effectively manage caseloads. Examining and comparing the

profile of district nursing caseloads with practice lists at a practice level is necessary to ensure

that the health and social needs of individuals and carers are met (Bain and Baguley 2012).

Approaches to improving care focused on interprofessional collaboration with General Practice

and referral to the district nurse and pathway of support for patients diagnosed with dementia.

The supportive role that district nurses play needed to be clearly articulated and recognised as

caring for people with dementia in primary care demands the same systematic approach as the

management of other long-term conditions. Follow-up of both individuals with dementia and

their carers should be incorporated into the district nursing caseload and allow integrated case

management and person centred approach to care, including opportunity for anticipatory care

planning.

Eleven patients on the register were newly diagnosed and were receiving post diagnostic

support and follow up from the CMHNs, however, following discussion with the post diagnostic

team it was recognised that eight of the patients within the first year post diagnostic period

would benefit from introduction and support from the district nursing team. One-year post-

diagnostic support from the community mental health team provides newly diagnosed

individuals and their carers with support in adapting emotionally and physically to their

condition. The CMHNs facilitate access to low levels of support and signposting. Timely

recognition and diagnosis is a prerequisite for improving dementia care, however diagnosis

often occurs late in the disease process (Vernooij-Dassen et al 2005) and the prevalence of

comorbidity in individuals with dementia is high (Bunn et al 2014). Patients presenting in

primary care with dementia often have a high level of medical comorbidity (Schubert et al 2006)

and the eight patients deemed as appropriate for district nursing support were presenting with

cognitive and physical decline. A co-ordinated approach to supporting individuals with dementia

out-with the post-diagnostic period of support appeared to be limited within the pilot area and

there was no joint practice intervention for when patients started to decline.

Delivering Integrated dementia care: The 8 pillars model of community support (2012) discusses

the fact that individuals living with dementia have a range of symptoms and benefit from a co-

ordinated team approach of practitioners from health, social care and third sector who all have

differing skill sets to offer. The hub meeting and pathway of support facilitated this co-ordinated

team approach, and offered an opportunity for the community mental health team to refer

patients for discussion who required an increased level of support and also increased the district

nursing teams’ awareness of patients within the practice who had been diagnosed with

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dementia. The district nurse can be a key factor in identifying patients with dementia (Waldorff

et al 2001) and during the span of the project four of the patients encountered by the district

nursing team for other clinical reasons were recognised as having symptoms of dementia and

referred for diagnostic evaluation. Two other patients identified as having cognitive impairment

impacting on their mental and functional ability declined referral for diagnostic evaluation.

These patients continued to receive support from the district nursing team and ongoing

monitoring of their condition, ensuring that they would receive equitable access to support

despite not having a formal diagnosis of dementia. Studies suggest that barriers to diagnosis for

individuals and carers include misinterpretation or denial of symptoms and fear of stigma

(Dungen et al 2011).

Educating and increasing the community nursing teams’ insight and recognition of these

barriers to diagnosis was an important aspect of the project. Facilitating a person-centred

approach to discussing dementia is necessary as Vernooij-Dassen et al (2005) suggests there is a

strong association between fear of diagnosis and social isolation. Educational support for

community health nurses should be focused on instilling confidence to help them recognise and

respond to people with dementia (Huang et al 2013).

Figure 2 indicates that the level of district nursing intervention increased substantially from

twelve hours face-face time and two hours non face-face time to at its peak forty five hours

face-to-face time and twelve hours non face-face time during the month of October. The

increase in hours delivering support and care to patients with dementia suggests that there may

have been a pre-existing unmet need for this client group. The community nursing team pre

project had a varied range of contact with individuals with dementia and their carers.

Episodes of care included wound care, catheter and continence care and palliative care. Their

professional responsibility to provide holistic support through co-ordination and care

management for individuals with dementia and their carers was not apparent and this is

supported in the findings whereby only one person from the dementia register was actually

identified on the district nursing caseload.

Face-to-face time and non-face-to-face time patient encounters pre project did not have the

diagnosis of dementia recorded within nursing documentation and this was only identified

through retrospective audit and recognition of patients following review of the General Practice

dementia register.

The goal of caseload management is co-ordination of care, assessment, planning, monitoring

and evaluation to improve patient outcomes (Ervin 2008). It is important to review caseloads

and workloads to ensure that resources are utilised effectively and are directed towards

individuals with the greatest need (Bain and Baguley 2012). This increase in face-to-face time for

individuals with dementia and their carers did require a high proportion of time allocated for

case management during the period of the project, as this was a large cohort of patients

previously unknown to the team. The number of hours would be expected to reduce after this

initial ‘catch up’ period and allocated time would then be limited to reviewing existing patients

and assessing new patients. The number of new patients to the caseload averaged at three per

month. This proactive and holistic approach to dementia care may have the potential to reduce

time spent on reactive task interventions and crisis management and this has been

demonstrated in the care of other long term conditions, involved coordinating input from other

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agencies to meet the patient and carers needs (Sadler 2006).

In Figure 3, a benchmark of the district nursing teams’ knowledge regarding dementia prior to

the project was recorded to gauge whether or not this increased following the education

delivered and experience gained throughout the project. Time was allocated for “A Skills and

Knowledge framework’ e-learning module supported by educational training sessions delivered

locally at ‘Anamcara’ dementia respite unit. All staff were provided with an opportunity to try an

ageing suit, which simulates visual and hearing impairment and involves weights and straps to

restrict movement. The ageing suit is designed to provide staff with an insight as to how elderly

patients, with or without dementia, may feel performing everyday tasks. This opportunity was

described positively with all staff reporting to have increased empathy for the challenges faced

when physical disability may be compounded with cognitive difficulty. The opportunity to liaise

with other health, social care and third sector partners was reported to be an important

dimension to learning and the opportunity to spend time within the dementia respite unit

facilitated by the unit manager, a key member of the project team, was very valuable.

Alzheimer’s Scotland North Ayrshire advisor readily provided information to staff on a wide

range of topics. This included advice on the different types of dementia, capacity and legal

issues, caring for someone with dementia, welfare benefits and other resources available for

carers.

Dementia awareness sessions were provided to the wider district nursing team and also the

staff within the pilot General Medical Practice were given the opportunity to become ‘dementia

friends’. This is an Alzheimer Scotland initiative to change the way people think, act and talk

about dementia. Improving the quality of care for people with dementia and the treatment and

care they receive is an essential component of the National Dementia Strategy (Scottish

Government 2010) and community health nurses that possess a high level of confidence in

dementia care are considered to positively influence the way individuals living with dementia

and their carers are approached (Huang et al 2013). Education has been shown to improve

knowledge, attitudes, and confidence in health professionals providing care for patients with

dementia (Nayton et al 2014, While et al 2010, Bryans et al 2003).

At the end of the project all the community nurses reported a significant increase in their

knowledge relating to dementia. A regulatory standard has been set that pre- registration

nurses receive dementia training (NMC 2010) therefore similarly If supporting individuals with

dementia is a significant role of the district nurse as part of the integrated support model of

care then community provision of education requires to be a key element of community nursing

professional development. Figure 4 demonstrates results of an electronic audit tool. An

electronic audit questionnaire of documentation was carried out to evaluate whether the ‘I’

statements from the Standards of Care for Dementia in Scotland were achieved. Five sets of

documentation from patients with dementia on the district nursing caseload were selected

randomly.

The objective of the audit was to measure if the assessment and care planning process recorded

information relating to the ‘I’ statements from the Standards of Care for dementia in the patient

record. The standards of care inform health and social care staff what is expected of them in

order to improve the quality of care they provide, each standard is measurable and all staff have

equal responsibility for meeting these standards. Audit of patient documentation was the

16

chosen method for this project. It has not been within the scope of this study to report on all

data relating to the ‘I’ statements from the Standards of Care.

‘I have a right to a diagnosis’

Four of the patient records had recorded a diagnosis of dementia and type of dementia was

recorded. One did not have a diagnosis recorded and this may have been because a referral to

diagnostic mental health services had been declined or the patient had been referred to

diagnostic mental health services and had not formally received a diagnosis at time of audit and

had therefore not been coded on the EMIS general practice dementia register.

Facilitating timely diagnosis is important in order to enable the individual and carer to benefit

from information, support and possible treatment. The community nurses recorded if the

patient was currently receiving post diagnostic support by the CMHN.

It was important that there was clarity regarding the CMHN as named nurse during the post

diagnostic support period in order to prevent patient and carer misperception of roles. The

community nurses had opportunity to accompany the CMHN on visits to observe the diagnostic

assessment process. This provided the district nurses with an insight into the approach and was

therefore an additional learning opportunity.

‘I have the right to have carers supported and educated about dementia’

Five of the patients had been provided with information about the condition and advice on

managing symptoms and treatment from the CMHNs. It was recorded in two of the audited

records that there was no longer input from the CMHNs and the individuals and carers

welcomed future visits from the district nursing team for advice and support and stated that

they were reassured that there was a locally accessible service. Information and support is very

important for carers when they take on an ‘active’ caring role (Berry 2013) and it is

recommended that carers should be offered access to a range of person centred interventions

including individual or group education (Dow and Robinson 2014).

Family carers for four individuals accepted an offer to attend a group information session or a

one- to-one session provided by Alzheimer Scotland North Ayrshire advisor. The group session

was arranged at a local venue to encourage attendance. Provision of education and support

delivered in different formats; telephone, internet, peer groups etc, tailored to the needs of the

individual and or carer is important. Support and advice is recognised as helping to enhance

coping skills, boosting confidence, increasing knowledge, and preparing the individual and carer

for the future (Milne, Guss and Russ 2013). One of the patients included in the audit had three

hospital admissions recorded in the two- month period prior to the project. It was detailed

within the patient notes that he was discharged from hospital following a second episode of

delirium attributed to a urinary tract infection on both occasions. Delirium is a separate

condition in itself; however, dementia is known to be an important independent risk factor

increasing delirium risk by between two to five times (Fong et al 2015). The assessment

documentation detailed that this male patient had been catheterised during a hospital

admission following a fall. The catheter had remained in situ following discharge and reason for

insertion was not reviewed. Urinary tract infection attributed to the use of an indwelling urinary

catheter, is one of the most common infections acquired by patients and the most important

17

intervention to prevent infection is the removal of the catheter (Nicolle 2014). The catheter had

been inserted as the gentleman had reduced mobility at the time of his first admission; however

on review there was no long-term requirement and the community nurse subsequently

removed the catheter. There were no further hospital admissions recorded during the span of

this project and the gentleman’s main carer; his wife has been supported to manage his

continence.

The ‘right to have carers educated and supported’ is multifaceted and may involve many

dimensions of support; teaching carers to cope with behavioural, psychological and physical

symptoms. Incontinence has been identified as a significant burden for carers (Drennan et al

2012). Supporting this gentleman’s carer by providing the individual with a comprehensive

assessment of continence, which addressed the environment, cognitive and functional ability of

the individual, was very important.

‘I have the right to be treated as a unique individual’

All of the documentation had recorded whether ‘The getting to know me’ dementia resource

funded by Alzheimer Scotland and Scottish Government had been provided. This document

provides the opportunity for individuals to record specific needs or preferences they want

family, formal and informal carers to know. ‘The getting to know me’ document had been

completed by one individual in the audit group and shared with day care respite services.

The content of the district nursing profile promotes a person centred approach to assessment

and care planning. Involvement of the individual and addressing their needs in relation to

activities of daily living was evident in the five patient records included in the audit. Detailed

information was recorded for three patient records and included important information relating

to health and social care needs, including hobbies and family relationships. Provision of

adequate time to provide a holistic assessment is essential. Being listened to and acknowledged

as an equal by health professionals has been shown to have a significant influence on patients’

self-perception and sense of dignity (Tranvag, Petersen and Naden 2014).

‘Right to be independent as possible and included in community’

Two thirds of people with dementia live in the community, and the mainstay of support for

those living in the community is provided by around half a million family carers (Alzheimer’s

Society 2007). The policy drive is to enable individuals living with dementia to stay in the

community (Scottish Government 2010) and provide information and support to equip carers to

continue the caring role. Three of the patients had main carers identified and two patients lived

independently. All patients had been referred to dementia community support services, North

Ayrshire Health and Social Care Partnership and four continued to receive this support. The

dementia support service provides advice, information and specialist support, which address

the unique needs of people living with dementia and their carers.

The support is provided within the home or the local community with the aim of assisting the

individual to continue to live at home for as long as possible.

The dementia support service is led by a key member of the project team and supports the

18

team to work with the individual to develop a care plan focused on outcomes identified to

maintain and improve quality of life for the individual and their carer. This service offered

opportunity for patients to stay connected to the community and a number of memory cafes

run by the support workers in Ayrshire provide a welcoming setting for patients and carers to

meet and talk to people in a similar situation.

The audit identified from the patient records that two of the patients had been introduced to

local support groups, and one patient had been provided with the opportunity to experience

day care and visit the local dementia respite unit. This had been a vital opportunity and

reassuring to one of the patient’s elderly spouse who was finding the caring aspect increasing

difficulty as his partner was declining cognitively and physically. Findings suggest that adult day

services can assist carers to organise their care provision time more productively and to the

advantage of the individual with dementia and carer (Gaugler et al 2003).

Assistive technology promotes independence and quality of life and can be categorised as

supportive with regards to safety, communication and leisure (Newton and Robinson 2013).

Assistive technology is an umbrella team that includes assistive and adaptive devices for people

with differing levels of disabilities including cognitive and functional impairment. The

documentation identified that one individual had assistive technology falling into the ‘safety’

category. Door sensors had been installed to inform relatives if the individual left the house

during the night and a sensor floor mat to detect and alert relatives in the event of this

individual falling out of bed. Telecare engagement sessions had been provided to health and

social care staff to increase their awareness regarding assistive technology devices available.

Electronic tablets may be used as a memory prompter to alert individuals to medication times

and therefore can promote independence and reduce unnecessary reliance on homecare

services. Signposting to technology may be an important aspect of a person-centred approach

to care and meeting the standards of care for dementia with regard to promoting independence

and connecting to the community. Cudd and Mountain (2014) suggest that advancing

technology and the impact it may have on facilitating individuals with dementia to stay at home

is very substantial.

‘I have the right to end of life care that respects my wishes’

No patient records from the five included in the audit had evidence that end of life care and

wishes had been discussed. Community nurses encourage anticipatory care planning with

patients with long -term conditions and patients diagnosed with palliative cancer diagnoses. The

importance of having end of life conversations with individuals living with dementia and their

carers is paramount, as involving them in decisions when they have cognitive capacity will help

ensure these wishes are respected.

Individuals often share their end of life preferences with family members through informal

discussion (Black et al 2009), however people may often be inhibited to talk about death, and

the unknown trajectory of this condition means discussions may never take place (Alzheimer’s

Society 2014). Opportunity for community nurses to be involved with individuals with dementia

and their carers from the outset when diagnosed may enable the nurse to acquire that

information as the nurse- patient/ carer relationship develops. A person-centred approach to

19

caring for an individual with dementia involves early communication and involvement in

decision- making. This can improve end of life care that respects their preferences and more

importantly allows the opportunity for them to articulate their preferences (Denning, Jones and

Sampson 2012).

CONCLUSION

There are many influences on the direction of community nursing and there are often pressures

placed on this generalist health professional towards meeting the increasing demands of long-

term conditions which previously have predominately been under the scope of other

professional groups. The escalating prevalence of dementia globally (World Health Organisation

2015) will mean that strategies and policies will be required to find innovative ways to respond

to and design services to meet the demand. This project aimed to provide an integrated early

intervention pathway of support that could attempt to respond to this increased challenge of

meeting the needs of individuals living with dementia and their carers, in the knowledge that in

this financial climate, resources would be static at best. A district nurse offered individuals with

dementia and their carers’ access to advice from a hub of multidisciplinary professionals.

The implication from this project is that providing a streamlined integrated health, social care

and third sector team approach may improve the availability of care and support. The

government’s 2020 vision (Scottish Government 2011b) advocates that ensuring person centred

approaches to care requires collaboration between community nurses and multi agencies.

Person-centred co-ordinated care transversing mental and physical health across health and

social care can help meet the differing care needs of individuals (Scottish Government 2015).

The number of patients on the General Practice Medical Register known to the district nursing

service increased as a direct result of this project and there was a shift of district nursing

resources directed towards this client group. This therefore increased the number of patients

accessing advice, education and support from diagnosis throughout the trajectory of their

illness. This strengthens the need for district nurses to be a key professional in maximising the

potential for this client group to access support before crisis intervention is required. It was out

with the confines of this project to measure the quality of this increased quantity of care and is

therefore a recommendation for further study.

The nature of referrals to district nursing services prior to this study had been limited to task

intervention and this was identified on workload planning tools. The results from this project

suggests that by applying a proactive caseload management approach to meeting the needs of

individuals with dementia this may counter unscheduled visits and provide opportunity for

planned holistic care. This ‘Catalyst for Change’ project implies that improving collaboration

between professional groups in responding to the needs of individuals and sharing expertise

and advice with each other is a step towards achieving the integrated care model advocated

within North Ayrshire Health and Social Care Partnership framework and the strategic plan of

the Scottish Government (2011b). Integrated approaches to dementia care are shown to

increase the quality of care provision (Perry et al 2008). Current models of caseload

management need to be challenged to take into account changing demographics and consider

models of support that include not only community nursing skills and capability, but draw on

support from partners, such as social services, voluntary and independent sector. Multi agency

understanding regarding the importance of identifying patients with dementia early, and

20

supporting the individual and their carers is key to improving quality of care and support

(Waldorff et al 2001), and recognising that although community mental health nurses have a

key role in effectively meeting the newly identified needs of people diagnosed with dementia,

other nurses working in the community are also encountering individuals in the early stages of

dementia. In the context of a policy objective to identify people with dementia earlier, all

community nurses should be able to recognize the possibility of dementia diagnosis and support

those undergoing referral or assessment. Their confidence in doing so should be enhanced by

continued professional development and training.

The next steps will be to evaluate this model and embed this service design as mainstream

practice within North Ayrshire Health and Social Care partnership placing individuals with

dementia and their carers at the heart of the care coordination relationship. If the model is

evaluated successfully, this will hopefully secure longer-term health and social care integration

funding for the community nursing workforce to have the capacity to formalise referral and

integrated assessment processes in order to deliver high quality personalised care. This will

involve continuing to working closely and to help achieve person centred outcomes with third

sector partners and increase number of dementia champions within health and social care

teams.

21

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27

FINANCIAL REPORT

ITEM COST

UAdministrative Costs

Stationary, postage, printing, photocopying

£250.00

UAdministrative Support

3.5hours per week for 6 months

£756.00

UTraining and Backfill

Band3 x2 x 7.5hours x £9.13 = £68.47 x2

=£136.85

Band 5 x5 x7.5hours x £13.43 = £100.73 x 5 =

£503.62

£640.47

UE-learning and competencies Backfill

Band 5 x 5 x 4hours x £16.38 = £327.60

£327.60

UDelirium Training x 8 staffU

6 x Band 5 x 4 hours (£16.38 x4 x6 = £393.12)

£393.12

UDedicated Project Time-Additional Hours

Band 5 - 4 hours x£13.45 per week x 6

months

£1291.20

UDementia Simulation Experience

£16.38 x 10 staff (1 hour) = £163.80

£9.13 x 3 staff (1 hour) = £27.39

£191.19

UTOTAL U£3849.58

28

Home care

manager

Palliative

Specialist

Nurse

Dietician

Telehealth &

Telecare

Adaptions/

Aids

Post Diagnostic

Team Housing

dementia support co- ordinator

CPN Post Diagnostic

team Alzeimers UK

patient/carer

AHP

social worker older

people services

District Nursing

team

Respite Services manager

EARLY INTERVENTION INTEGRATED APPROACH TO SUPPORTING INDIVIDUALS/CARERS LIVING WITH DEMENTIA

DN GP

PRE +POST

DIAGNOSIS

REFERRAL

Memory

assessment

services

Early intervention intermediate end of life pathway

Patient/carer

Pharmacy

Advisor